Nothing Can Stop Me

Diagnosed at 33

My name is Mauricio Sanchez, I’m a 39 year old male diagnosed with Parkinson’s disease and dystonia at the age of 33, but struggled with symptoms of the disease for two years before that.

Symptoms began gradually and one day I noticed that I was having trouble brushing my teeth with my right hand. It would cramp and get painful. I bought a sonic electronic tooth brush to see if it would be easier to brush, but had no success. As time went by, my symptoms got progressively worse. I started having trouble with my writing, it would get smaller as I wrote and even I couldn’t understand it.

I also noticed that my right hand would tremor and cramp when doing chores. Then I began having trouble walking. My right foot would drag with a limp. So I decided to go see my primary doctor and told her the problems I was having. She said that some people would have tremors when stressed and told me to drink a glass of wine every night and it would go away. I followed her advice for about three months, but my symptoms got worse. I noticed I was getting stiffer and was having trouble driving long distances. My right foot would freeze and cramp with pain. I also was having trouble getting out of my car. I would be out on the street feeling lost and unable to focus.

As time passed, my wife noticed that my attitude was changing. I would get very irritable with the kids. I didn’t understand what was happening to me. I would get muscle spasms on my right upper neck area. I went back to my primary doctor for my physical and told her all of the problems I was having. My drinking the glass of wine made my symptoms worse. She noticed that my tremor had gotten worse and she said that something was not right. She sent me to see a neurologist in San Pedro, Ca. He discovered that I displayed dystonia with Parkinson’s like symptoms. He then performed multiple tests to rule out various diseases. All of the tests were negative. One of the tests was a lumber puncture which on a good day was no fun. After the test I developed headaches due to a spinal fluid leak which required hydration and hospitalization. I needed two blood patches to stop the leak and then the headache went away. After going through all of that the specimen was lost so I was still without a diagnosis.

The neurologist insisted that I still showed signs of dystonia with Parkinson’s disease, but to have a better answer, he sent me to UCLA Medical Center dept of Neurology where they had the best neurologist for movement disorders. Meanwhile, as days went by, I was walking like a stiff board. I didn’t understand what was going on in my body, was it because I was working out too much? I’ve always exercised (e.g. run, lift weights) and ate healthy. I thought that the more active you are the better health you are in.

Finally, when I went to see Dr. Yvette Bordelon at UCLA , she stated that she agreed with the San Pedro neurologist, but she wanted to do an F-Dopa/PET scan. As I came to find out, this is not an easily attainable test. * In order to do the scan, an authorization from my medical insurance company was needed. So once again I was left in the dark. The authorization was submitted, of course it was denied because the other tests were negative. I filed an appeal with Blue Cross HMO and once again they denied the test, by this time I was getting ready to give up. Thank God my wife and I worked for the same employer, because we had the choice of having two different insurances an HMO and a PPO. Finally, when open enrollment came, I enrolled in the PPO. After that I had to wait for the medical insurance to start. I called Dr. Bordelon at UCLA and told her that I had changed medical insurance and to please schedule my PET scan because my symptoms were getting worse. I was having difficulties walking and had developed a limp on my right lower extremity, with cramping and it was affecting my job performance. I finally had the PET/scan which showed bilateral decrease of dopamine of the brain, more on the left side than the right side.

When Dr. Bordelon gave my wife and I the results, I felt like my life was ending. Dr Bordelon looked at me and she gave me a hug saying, sorry for the bad news. When my wife and I left the office, we drove to Torrance Memorial Medical Center and spoke to my Director and Supervisor. I told them that I was diagnosed with Parkinson’s disease and dystonia. They were speechless at first, but their response changed immediately to one of compassion and support. I am lucky to be working in a place that offers such support and caring to their employees. I then started the rounds of different medications and dosages. There are many side effects to PD meds. The worst side effect I encountered was obsessive gambling. I spent a lot of time going to the casinos, everywhere. I eventually used up all my credit cards and even borrowed from my retirement funds and was unable to pay my mortgage. I stopped that medication, but by then I ended up declaring bankruptcy. It was the worst of times.

Besides my wife, kids and in-laws, my co-workers and friends give me the strength on a daily basis to fight this disease. I go to the gym early every morning that I can and work out with weights, treadmill, etc. One of my good friends at the gym cuts me no slack to keep me motivated. We also have two dogs, Dash and Dollie who accompany me on walks every day, and my bird Ricky who loves to whistle for me. I look forward to the 3rd Wednesday of the month where my wife and I participate in a Young Parkinson’s support group at Cedars Sinai Medical Center. Here I feel like I am at home because all of us have so much in common. We share ideas and feelings.

I am running in my third charity run soon, the Parkinson’s Beach Brigade, with my own team, “The Dancing Feet with Mauricio”, to raise money “for the cure”. On February 11th I am going on a 3-day cruise “retreat” for Young Parkinsons’ patients with two of my buddies, Steve and Kevin, who also have PD. They are great to hang out with and we support each other in many ways. I am hoping that meeting new young people with PD on this cruise will “recharge my batteries” and offer me a new outlook.

I have up days and down days. I never know quite how my medications are going to affect me on a daily basis. I get some relief from acupuncture and massage at the office of Dr. Carol Hong in Torrance, Ca. I have had to become a left handed mouse user because I am never sure what my right hand is going to do at work or while I am eating. That can sure cause some embarrassing moments.

A new plan in my life is to consider the DBS implant surgery. I think I have a good attitude and with prayer and my support people, I can do it.

PS. I just returned from the 3 day cruise retreat, the people I met on the cruise inspired me to continue to stay in control with this disease. Some of the people I met exhibited symptoms which were more severe than mine, which provided me with a different outlook on life. It shifted my sometimes “woe is me” attitude to a more “I should be grateful” attitude for what I am still capable of doing. It also inspired me to take more of an interest in others and their needs. When the self centered model changes, so does your whole perspective. (Mauricio is pictured above (center) with friends Steve and Kevin on the Parkinson's Cruise/retreat at Sea in February 2011.)

15 Comments

I was dx with YOPD with dystonia when I was 34. Being a mom with three boys I knew I had to somehow manage but it has been very hard. I can't work like I use to and my kids don't understand why I can't always be there for them. That's the hardest part. I have an amazing husband and that helps a lot. I have no support where I live and sometimes I'm not sure how much more I can handle. I just try to have faith but it's hard because I know this disease is progressive and incurable.

Mauricio, You have taught us so much about what is important in life and how strong our survival skills can be when put to the test. You have inspired us all and your message touches my heart!! xxoo jackie

Mauricio, since I first met you at a Young Onset retreat a few years ago, I knew we'd be great friends. My husband (Mike-diagnosed with PD at age 36) could relate to the changes in your life and I think the two of you have a great mutual admiration. Keep up the good work, keep your spirit high, and don't sweat feeling bad for yourself sometimes. It's only natural. See you on May 1 at the Parkinson's Beach Brigade Walk!

Wow! Mauricio you just made my day, I was diagnosed at 35 I am 40 yrs old now, soon going on 41, but all these years I've been in denial, feeling sorry for myself and very depressed, but today I read your story and I said to myself Wait a minute I am not alone there is others younger then me with PD. I would love to meet other people, I've tried support groups, but I left more depressed because all the participants were 80 - 90 yrs. old with very advanced PD. Mauricio can you please tell me about the Young Onset retreat. And the cruise is it the same as the retreat or is something else? well thank you for inspiring me to move on and keep fighting and not feeling sorry for myself. Hope to hear from you soon.

Mauricio,
This just the thing everyone needed to hear. You are a giver and not taker for sure. When you share your story like you have it's a attitude adjustment to us reading it.I met you in Malibu a few months ago and could tell what a good caring guy you are. Follow your dreams and keep this great approach to things in life. I to have been thinking about DBS but I know I don't have my attitude there to go through with it. I will always keep a open mind towards it...I'm just not there yet. I hope to see you at the Parkinson's Beach Brigade Awareness/Walk/Fundraiser. If you or anyone needs a support, stop in my Conference room located at http://www.parkinsonmeetingroom.com

Mauricio, Norma shared your whole story with me. I knew that you had been through much pain and hardship, but never knew the full extent of what has been happening to you. To say that you are inspirational is an understatement I think. I'm so proud of how you have handled yourself and how you are trying to make things better for others suffering with the disease as well. Your positive attitude and caring personality sets you apart from the crowd. Support is so important and I know there are many others rooting for you as I am. My love and prayers are with you always. God bless you and your family.

Your an inspiration Mauricio. You are blessed to have a great family and support. Hopefully, with hard work, science can come up with treatments to halt and even cure the disease. In the meantime, hang in there my friend. You give other folks hope.

I'm not often at a loss for words. Your story silenced me. We've been working out at the gym for what seems like forever & I watch you work out hard with that beautifully sculpted body. U explain to Norma that this comes strictly from a workout admiration standpoint, that I'm old enough to be your Mom & work out along side my hubby. I knew U before all the tremors & shaking began. Yet today, U workout as hard, if not harder to maintain. We've acknowledged each other, seldom talk at length but at Bally's we are like family & don’t need daily contact to express our friendship and camaraderie. So it deeply touches me & it truly hurts to see what U have to deal with every day knowing that YOUR mental toughness is what holds the key to your future with this disease. The choices YOU will make to try and beat this thing are up to U. My admiration for you is beyond words. it’s a privilege to share the same workout space with you. I wish you all the strength & love.

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Is anyone still here? I see there have been no comments for the past 3 years. My 42 year old son was diagnosed with PD (and later Dystonia) at age 26. He has bilateral DBS implants and recently had tendon release surgery on his ankles which enabled him to walk again. Would like to communicate with someone.

Hi Maryann,
Sorry for not replying to your note sooner,i don't check my posting that much, a lot has happen with since I wrote this story, I also had bilateral DBS implant two and years ago got pd and Dystonia, feel free to contact me by email mauriciotmmc@yahoo.com.
Hope to hear from you soon.

Mauricio, Jun 28, 2014

good rto read someone else has this sorry did not mean that how it sounds i have had dystonia my hand got stuck in the up position im 54 bin dignosed about two years i wont let it beat me but i get emotional at times do u kno any young support groups i live in poulton near blackpool lancashir thanks hope u are doing ok this disese can be hard i freeze sometimes can walk but i figt it bin put on highe tabs they make me nauseaous also looking for any books that may help thanks regards to anyone struggling with this disease hope they find a cure with michael j fox helping we may have a chance